Promoting Rights of Children with Disability Labels

My name is Elisabeth and I am 15 years old. While on vacation this year, my mother read an editorial from US News to me written by a human rights activist who was complaining about other people who still don't understand people like her. People like me. People with disability labels.

In the article, she was asking why people still think that her life (or my life) is less valuable just because we look different and depend on a lot of people to get everyday things done.

The point is this. Just because we look different, act different, or cannot communicate the way most people understand does not make our life worth any less than our biological peers.

When I found out that some people would rather die than spend the rest of their life in a wheelchair, it really disheartened me because I will probably be in a wheelchair all my life and it's really not all that bad except when you have to wait for people to make a clear pathway for you. Or when it takes a half hour to get into a building to which most people have direct access.

It's really not that bad when I have to wait for my parents to do things that most people take for granted like using the bathroom, brushing my teeth, and combing my hair. I'm working on that and other things into my own independence, but it would be a lot easier if I didn't feel the pressure all the time to be like the other kids.

I am who I am. Not because of what I can't do but what I can.

I'm pretty happy for a 15 year old. I don't have the peer pressures that most teenagers have my age. I enjoy being around people, listening to music, and dancing. I love to hear jokes and be around laughter. I enjoy being outdoors and backpacking up in the clouds.

This year, when my family was on our annual backpacking trip, I heard them talking about inventing a backpack on wheels for when I get heavier and taller after they read an article about a man whose friends did just that after being injured in a car accident.

This made me happy that people were thinking ahead to include me in the future. I can't imagine any child or adult being excluded from any opportunity because nobody thought ahead. Nobody had room for them.

I can't find the editorial right now but if you come across it, it's in the "Best Hospitals in the US" August 2009 magazine. Even though it echoes Ms. Harriet McBryde-Johnson's concern about how the population of people with disabilities are losing control over their life, she would be very happy to know how many more people are fast on their wheels to dispel all the information and arguments about how our life appears to be worth less because of the way we were born.

Writing On the Wall: Zach Miner's Article "Court Ruling Helps Special-Needs Students

I live in a school district that respects the individual rights of each child offering a free and appropriate education based on their individual developmental abilities. Unfortunately, many districts do not. Here's what can potentially happen to any school falling short of their responsibilities ...

Court Ruling Helps Special-Needs Students from US News blog ...


June 24, 2009 01:29 PM ET Zach Miners Permanent Link Print

Parents of children with disabilities will encounter fewer obstacles obtaining needed services—and school districts might see themselves go into the red by millions of dollars—thanks to a recent Supreme Court decision that special-education students' parents may seek government reimbursement for private school tuition even if they have never received special-education services in public school, the New York Times reports.

The case before the court involved a struggling Oregon high school student, identified in court documents only as T.A., who was found ineligible for special-education services in the Forest Grove district after school officials evaluated him for learning disabilities. His parents removed him from public school in his junior year and enrolled him in a $5,200-a-month residential school. Only after T.A. enrolled in the private school did doctors say he suffered from attention deficit hyperactivity disorder (ADHD) and other disabilities.

The crux of the case was whether a 1997 amendment to the Individuals with Disabilities Education Act, or IDEA, prohibits students from receiving private-school tuition reimbursement if they never enrolled in special-education services in a public school. The high court's ruling makes it clear that it does not.

The amendment, which now has seemingly been rendered all but obsolete, says tuition reimbursement may be available for students with disabilities if they "previously received special-education" services in public school, but the services were not timely delivered in a free and appropriate manner.

Forest Grove argued that the amendment precluded reimbursement for those, like T.A., who never received special-education services in public school. But in a 6-to-3 ruling, the court rejected that argument.

"We conclude that IDEA authorizes reimbursement for the cost of private special education services when a school district fails to provide a free and appropriate public education and the private school placement is appropriate, regardless of whether the child previously received special education or related services through the public school," Justice John Paul Stevens wrote in the majority opinion.

Before the ruling was issued, disability rights advocates argued that had the court ruled in favor of the district, schools would have an incentive not to identify a student as learning disabled.
But the verdict doesn't necessarily mean that it's all smooth sailing now for parents of children with learning disabilities. Ron Hager, senior staff attorney at the National Disability Rights Network, describes five areas of concern that parents should keep in mind in light of the ruling:

Know Your Rights

"School districts have an obligation to locate and evaluate children to determine if they do have a disability," Hager says. "The IDEA law envisions that the parents are equal participants with the school district in developing the child's program, but parents frequently don't know what their rights are."

"Every state has two different programs that are funded by the federal government to help parents," Hager says. "The first one is specifically funded under IDEA itself. They're called Parent Training and Information Centers. Every state has one. Option 2 is a program called Protection and Advocacy for People with Disabilities. And their mission is not just special ed. The Protection and Advocacy programs cover all areas of disabilities, from birth to death, and discrimination, and include parent training. Many times, the Protection and Advocacy and Parent Training Centers work together. So, parents should try to find somewhere near their home where they can get training on what the school is supposed to be doing, what the parents' rights are, what the child's rights are ... The better educated the parents are, the better able they are to work with the school, and if that school is not doing it right, then they'll know."

Get Involved

"School districts have an obligation to ensure that children with disabilities receive an appropriate education based on their individual needs," Hager says. "It's not one size fits all. The parents should be looking at, 'Are my child's needs being met?' Schools have the obligation to identify children with disabilities, and as part of the process, they're supposed to do comprehensive individual evaluations and look at all possible areas of disability, not just one. There should be a planning meeting before [the schools] actually do the evaluations, and even there, the parents should be involved to look at what types of evaluations might be needed."

Question the Evaluation

"The other thing that's critical for parents to know is when the school has done its evaluations, if the parents disagree with the results of those evaluations, they have the right to an independent evaluation at the district's expense," Hager says. "So, the school kind of gets the first bite at the apple, then if the parents are unhappy or if they disagree, they can request an independent evaluation. So, there's a series of checks and balances built into this process, but if the parents don't know, it's useless. But don't just go willy-nilly and ask for an independent evaluation. If you're looking at the evaluation and you're saying, 'This is just not my child,' or 'I think they're missing something,' then that's a legitimate concern."

Be Wary of Narrow Criteria

"The other thing that happens ... is that the school districts have an overly narrow view of what the criteria are for special-education eligibility," Hager says. "Frequently, with a child with ADHD, they'll look at whether the child is doing well academically. Especially with a kid who may be really bright, he may be able to pass his classes, barely maybe. He might do very well on standardized testing, but he might be getting into trouble all the time. And the criteria for ADHD is an adverse effect on educational performance, not academics. And IDEA has always looked at not just academics as part of education, and it's gone more and more that way over the years since it was first passed. So, school districts tend to be overly narrow and overly restrictive in qualifying children for learning disabilities."

Don't Wait to Take It to Court

"Parents should appeal right away," Hager says. "Don't wait for four years. But many parents do, because they're frustrated, they don't know, or they assume the school is telling them the right thing. So, they go away, then the kid gets worse and worse, and they come back again. They might come back five times before they finally get mad enough to fight. And it shouldn't be that way. It's not supposed to be that way. It's supposed to be a collaborative process. But don't just go ballistic. One of the factors the Supreme Court made note of toward the end of its decision is that when you look at reimbursement, you do look at whether the parents were in good faith working with the school district."